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12,528 Views 15 Replies Last post: Feb 7, 2011 9:00 AM by blackbun40 RSS 1 2 Previous Next
Holly 60 posts since
Jan 23, 2011
Currently Being Moderated

Jan 29, 2011 7:10 PM

My husband died of cancer of the oesophagus

Hello, I only discovered this website by accident a week or two ago, it was on Facebook so I clicked on the link and discovered lots of people sharing their experiences, I have responded to a couple of people already. I only wish I had discovered the website a year or more ago when my lovely husband and I were facing his diagnosis of cancer of the oesophegus, which we were told was inoperable. There is so much support and useful advice and I am so sad that I have missed the opportunity to share our experiences and share the wonderful support we could have had.

 

My husband sadly died in November last year and I am just distraught and unable to come to terms with his death. I suppose he was so much stronger than me in the end although he always told me that I was the strong one in our relationship. He was diagonsed in December 2009 and commenced Chemo 2nd February 2010. He was supposed to have 8 sessions but only managed 6. He suffered so much during his Chemo sessions, ended up in hospital with severe sickness one time, a blood clot on his lung another time. He was also a COPD sufferer and one time a doctor told us he didn't know how my husband was still able to breathe as his lungs were so poor. But he battled on and never ever gave up hope. Unlike me he refused to read anything about his condition, I had read and known that he was unlikely to survive beyond a year - but his amazing spirit and determination did have me believing he could be with me for a few more years.

 

Last October he developed a horrible cough, i was so worried and told him he had to see his GP. He relented and we went, only to be told his chest was 'crystal clear'. Well that was such a relief to me as two years previously he had pneumonia and was in intensive care on a ventilator for 11 days. Only a few days later he got up one morning and couldn't stop coughing and his breathing was bad. I called an ambulance and the paramedic tested his sats and told me they were below 50 which is dangerously low. He was admitted to hospital and spent the next 3 weeks recovering. By this time he was very weak and barely able to walk. He was constantly on a drip which was very painful for him as they had to put a canulla in his veins but due to the Chemo it was very difficult for the doctors to even find a vein. After he'd been in for one week a doctor came and told us there was calcium in his bloood. I had no idea what that meant and no-one explained it so I looked it up. There are several reasons but one of them is cancer spreading to the bones. He did get a bone scan but no-one came back to us so I assumed it was ok. My husband was one of those people who thought 'if they find something they will tell us, I am not going to ask'.

 

Anyway he got home on the Friday afternoon, was I happy!! I knew he was weak and tired but in my mind I just thought he would pull through. Only the next day when he was trying to eat he started having difficulty, nothing would go down. We watched a bit of TV that night then he went to bed. He never ever got back up as the following morning he was just so poorly and couldn't get out of bed. when eh was breathing his chest sounded to be crackling and I feared he had another bout of pneumonia I had to get an emergency doctor and the district nurses were coming to give him an injection for his pain. The following day I called his own GP out who hardly spent any time looking at him, just asked me if he would be able to take liquid antibiotics and off he went. He rang me about 4 hours later asking if I knew that it was 'end of life' for my husband. No way did I believe that diagnosis and asked how he could make it when he didn't even look properly at him. He then decided to try to get my husband re-admitted so they could do an endoscopy as he was unable to swallow by this time. They took him back into hospital at 1.30 the following morning, did the endoscopy later but then nothing else. I wondered why they weren't treating his chest infection.

 

That same evening they transferred him from the admittance ward back to the ward he had been on but they put him on a side ward. Some people have told me I ought to have known that he was nearing the end then. Why should I have known? He was on a side ward when he had the blood clot and recovered. I so so regret going home that night when visiting time was over. No-one mentioned that I could stay and I always thought, wrongly I know now, that he woul pull through. I did ring the ward about 9.15 but the nurse said she had just come on duty nad was busy treating another patient and hadn't seen my husband yet. I wish I had rang back but didn't want to become a pest. At 1.30 the following morning I got the phone call to say my husband had deteriorated so I ran back to the hospital. the doctor told me he was going to die and they would not be able to resuscitate him, did I have any questions. I only wanted to be with him so they let me, but he looked so different to when I'd left him a few hours before. I'm not sure if he would have known I was there as the doctor said he was almost unconscious and I could tell by his eyes he was just not properly awake. I must have been in shock as I have no idea what I said to him. He died within minutes of me getting there but I have very little memory of our last moments. My sister managed to get there too so she has told me littel bits, but she wasn't there the whole time.

 

I feel tremendously guilty about my apparent lack of concern that night, just going home and leaving him like that. I ask myself how I could have just been so certain he was going to be ok and the only answer I come up with is this - he thought he was going to be ok and in the end I believed in him and not what I had read about this hideous illness. He was a massively positive person, unlike me, but that is what got him through those months while he battled his cancer. I was so certain he wouldn't be with me for most of last year but there he was fighting until November, as well as his battle with COPD.

 

I miss him so much and there hasn't been a day since he died that I haven't cried for him. We were so close and did loads of things together. I wonder how I'll ever get over losing him. I've got a lot of wonderful friends who come to see me, invite me out, they're just there for me. I am so grateful because they do help take my mind off things but then when I'm alone the grief closes in around me and I find myself crying for my loss. I have read other posts and know it's not only me, but sometimes it really does feel that way.

 

Holly xx

Gardenshed 12 posts since
Nov 1, 2010
Currently Being Moderated
1. Jan 29, 2011 8:22 PM in response to: Holly
Re: My husband died of cancer of the oesophagus

Hi Holly

Please believe me when I tell you that it is impossible to tell when someone is going pass away-I was in exactly the same position as you at Christmas with my Wife Pam-I bet that like me you were absolutely exhausted with the worry and stress.I went home for a shower as I had been in the relatives room for the past 24 hours and it was only when I got back that I realised that she was going to die-the nurses and Doctors gave me no indication other than saying that she seemed a little bit worse on that day.

 

You wont remember much about the actual events as I think the mind goes into a kind of shock to try and protect us-I know that I held her in my arms and whispered to her as she went but it still doesn't seem real and I dont think it ever really will but you were with him when he left and that is important for you,I dont really think that Pam knew that I was there but it helps me.

 

Please dont feel that you are alone there are thousands of people like us out there and keep coming on if it helps

 

Take care

 

Simon

5 posts since
Jan 29, 2011
Currently Being Moderated
2. Jan 29, 2011 8:39 PM in response to: Holly
Re: My husband died of cancer of the oesophagus

Hi Holly,

 

i have been so moved and saddened by what you have gone through and still enduring quite simply i think that you have been amazing to share this,and one day you will see how strong you are to inspire others with how you are coping, i cannot imagine the loss you are feeling to lose your best friend, grief is such a small word that cannot sum up the emotions that make it the word it is, thank you for sharing your thoughts here as our feelings are real in a surreal circumstance and its helping me that im not alone in a world that i took for granted for being "normal", but to be dominated by cancer  love Tracey xxx

blackbun40 27 posts since
Jan 27, 2011
Currently Being Moderated
3. Jan 30, 2011 8:23 AM in response to: Holly
Re: My husband died of cancer of the oesophagus

hi holly

i lost my husband 'steve' within 8wks fo being diagnosed terminal oespphagus and liver cancer aged58yrs i can relate to everything you have gone through, i felt we never got a lot of support form the hospital all they did was take blood never had scan to tummy, lack of communication over weekend  by the tuesday steve was allowed home still. no scan.he was due at christie the cancer hospital to talk abut what to do next, as the chemo was not working. then out of blue, steve said he did not wwant anymore treatment, then ask doc how long he had left. we were told 3mths at most, steve just stood up and bolted out he door as fast as his feet could take him. he cried outside that is the second and only time i seen him do it. we got a call later that day that he needed to go back in again on monday to have stomach drained as it was very swollen due to liver not working.he was too poorly on the monday.so the did the procudure on tuesday. the drain was taken out on the thursday, by then steve was unseady on his feet. just going downhill really. on friday morning the doc said there is nothing else we can do at this moment in time, we dont want to put you through anything else  as we know you don't have long left, we were shocked!! steve just walked away ot he toilet with some help i could hearing him crying his eyes out. i chased after the doc and was told he was deterioating, i knew that! but just not this quick?  so we left the hospital an hour later had to get steve a wheelchair there was no way he could walk far. he went to bed hardly ate on saturday morning he ask for glass of milk which he drank. in all the years we have been together(21yrs) he has never ask for it??? he was more cofused by sunday morning ,nurse wanted to put cth in as he was really unsteady on his feet. but he refused  so we tried a urinal bottle he could not pass anything. he actually thought it was xmas day today. was very unsettled only catnapping at times, refusing to have morphing as well as the patch he had on. it was a unsettled nite, monday morning he did not want any fluids are meds. i watched him thoughout the day the nurse came a few times to suggest getting a bed for downstairs and put him on a striver the next dy as the doc had to give go ahead, still not passing urine by 5pm. he just looked pained in the face, at 5.30 i went downstairs to make tea, steve was asleep. at 5.45 i heard a thud steve had got out of bed. managed to get him back in , he rolled to his right side. i could see his was 'going, he had a tear in his eye' i shouted the kids(twin girls 12ys) into the room, i lay down on bed with steve the twins held his hand , he breathing got shallow he died at 18.10 so peace and he looked painfree, i had no idea he was going to past that day. and i work in the hospita!! so please don't feel guilty is a waste of time. just think about all the happy times you shared ssteve was my best friend soul mate. what will i do without him?. i'm sure we can help each other through this

 

Message was edited by: blackbun40

Gardenshed 12 posts since
Nov 1, 2010
Currently Being Moderated
7. Jan 30, 2011 8:01 PM in response to: Holly
Re: My husband died of cancer of the oesophagus

Holly-I know you think that the pain will never ease but I can promise you that although you will always feel sadness you will also learn to feel happiness again-I have some terrible days where I

am not really thinking about what I'm doing-I might be making the kids lunch for school or ironing but all I am really doing is thinking of Pam dying in a horrible way or the last few weeks that my beautiful wife spent looking like she was wasting away.I have gone for counselling at the hospice adjacent to where she died and I am finding that this is helping a little,talking about things is the key for me and being on here is also a big help.

I get very upset when I go back to the hospital and see reminders of the time she spent there,but I feel that be facing down the demons within I will be able to cope and be strong for the kids and her sister,her Mum and Dad etc.

The future seems very bleak at the moment but I have decided that I have had 24 years before I was married,24 and a half years of the most wonderful lady on the planet and that my life is now entering another phase where I can hopefully do what Pam told me when she knew that she was terminal.

She said that I had to look after our "babies"(aged 18 and 16!)

She said that I was to mourn her and then get on with life

She said"Life is for the living Si so dont sit around on your bum for too long"(she had a way with words-a bit blunt our Pam!

I dont think religion comes into it at the moment but I do feel close to her still and I just know that she is still aroung guiding me in everything that I do-I just know that one day we will be together again and that makes me very happy.

Keep posting

 

Simon x

Shalia 5 posts since
Jan 20, 2011
Currently Being Moderated
8. Jan 30, 2011 11:34 PM in response to: Holly
Re: My husband died of cancer of the oesophagus

Hi Holly.

I was the lady that put the post on last week saying that I lost my wonderfull husband to oesophegus cancer on 9th December. I apologise for not supporting you last week as like you I get great comfort from these messages. I thought i was having a good week last week if that is possible. I went out to lunch with an old work colleage who I hadnt seen in a year, and I went out with a neighbour who lost her husband to cancer 7 years ago and she still gets tearfull talking about herhim as I am sure we all will. If one more person says "good for you for getting out Dave would be proud of you" i think I will bash the next person. They have no idea how hard it is.  Yes all my family have been there for me and I know my 2 sons and 4 grandchildren are also feeling the grief. Hope this next paragraph will bring a smile as it did me.

 

My youngest Granddaughter who is 6 was going to school with her dad and out of the blue she said Daddy what do you think grandad is doing now. So he  said I dont know darling what do you think he is doing. She said " I bet he is sitting on a settee with the remote control in his hand  watching sport on the tele, in fact I bet he is watching Cricket or motoracing". It brings a tear to your eye but we had to smile as well. Maybe we could all share liitle stories like this if it helps. I noticed that the Rugby is on this week. Dave was so passionate about his sport especially Rugby. so my tears today was he wont be here at the weekend to see his beloved Rugby on the TV.

 

Holly have you heard from the nurse you were going to have a chat with. Daves consutant sent me an e-mail to send him some questions that we want to ask, I am putting together a list this week.

 

Speak some more in the next day or so.

 

I wish we could get together as your husband had the same cancer as mine as did a couple of others on this site. We could have our own berevement chat and share our guilts, anger and stories of our loved ones. I live not too far from Oxford are you any where near      

blackbun40 27 posts since
Jan 27, 2011
Currently Being Moderated
11. Feb 2, 2011 3:34 PM in response to: Holly
Re: My husband died of cancer of the oesophagus

hi holly what you are feeling is FALSE GUILT we are punishing ourselves because they are no longer with us. you are mourning and the bad things come to surface before we think about good things and times. i have been like this too. everyday i think of something bad and then i think but we had loads fo good times. do you have support from doc or counselling? i'm waiting for my counselling appt i need ti ge alot of my chest i also asked to have an appt to speak with the doc that was treting steve, i need to know what happened? why did he die so quick. i feel i will learn to accpt he has gone if i know these things and also to have access to his records . keep thinking of the good times you have memories forever

blackbun40 27 posts since
Jan 27, 2011
Currently Being Moderated
13. Feb 5, 2011 7:34 PM in response to: Holly
Re: My husband died of cancer of the oesophagus

hi holly. i am still waiting for someone to call me back to arrange appt to see the consult. i have been told i can see his notes regarding his treatment while he was in hosptil.;. willl phone back monday. i have had my hair done this week (badly needed it)     also had counselling assessment. will get  a call next week at arrange what day i go. i'm sure it will help me along the way to be-able to talk about what i have gone through over the last three months. i'm meeting a friend of wednesday for a drink, she lost her hubby three years ago to lung cancer within three months. i stilll feel guilty about being alive, but i know steve would say' carry on and look after the girls for me'.  everday is still hard and i know it's going to get worse before it gets better, but it's still a frightning journey, hope you feeling ok today

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